Growing up in the UK, Emma received care and services that helped her adapt to life with cerebral palsy. For some patients this disease affects cognition and neurology, but Emma was born with a less severe form causing mostly physical impairment. She was a bit clumsy and fell more often than her peers, but was able to live a mostly normal childhood. At 18 she was discharged from support services, as it was believed she had been given all the tools needed to thrive. Since this disease is not considered to be degenerative, it came as a shock when Emma started to experience a decline in her mobility during her 30s. It was an even greater shock to realize that support for adults with worsening CP symptoms was almost nonexistent.
In this episode of the Major Pain podcast, Emma discusses the disconnect between the medical view of cerebral palsy and the actual experience of living with it. Cerebral palsy is caused by damage to the brain around the time of birth. Since this damage does not get worse over time, CP is not classified as a degenerative disease. However, living in an adult body developmentally affected by cerebral palsy brings with it wear and tear that can be progressive and debilitating. Seeing a huge gap in this awareness, Emma turned to activism. She now works full time with the Adult Cerebral Palsy Hub, advocating for the needs of adults with her condition. Further research and understanding is needed to provide a clear care pathway for these adults, many of whom feel lost and ignored.
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast/